Who’s Afraid of the Big Bad “A Word”?

I almost named this blog, “Who’s Afraid of the Big Bad A Word.” I remember the first time I heard it concerning my children. My oldest (D) had an evaluation by Early Intervention for a speech delay when he was barely a year old and I remember that there was a Developmental Therapist and Speech Therapist at my house and they seemed to be trying to tell me something without telling me it directly. After observing him they exchanged knowing glances and mentioned how he constantly ran into the sofa and other objects. They pointed out his lack of sustained interaction and eye contact. I really didn’t know what they were getting at, but they recommend an evaluation by an Occupational Therapist and repeatedly used the term “sensory integration.” I locked the term in my memory and rushed to my PC to look it up as soon as they left. I found that it was almost always used when talking about Autism. “Autism?” I thought. “Well that can’t be right.” I read more and worried more and waited for the OT evaluation.
When the Occupational Therapist came to do the evaluation, she continued with the “sensory” talk, but assured me that it didn’t mean that he was Autistic. She, of course, could not make a medical evaluation anyway, but there began my journey that would change my life forever. Occupational therapy, Developmental Therapy, Speech, Floortime, tens of thousands of pages of books, countless internet sites, videos, evaluations, hyperlexia, IFSPs, IEPs, and hundreds of other acronyms familiar to the exclusive “Autism Mom” club members. There was no “cure” and for me, at that time, that meant that “experts” believed there was no hope. For some “experts” that is exactly what they meant. After six months of intense speech therapy failed to produce even one spontaneous word or sign and little, if any, understanding of speech, I was told that my son may never speak. Well, his the story of his journey “off” the spectrum (maybe, maybe not) is for another day, but he did learn to speak and quite well, thank you very much.
When our second son (P) seemed headed for a similar diagnosis, we had little fear of the “A Word.” We knew what to do and he would be just “fine” also. We worked and read and took him to therapies, just like we did with our oldest, but he didn’t make the same progress. He was hyperlexic, like our oldest had been, but even more extreme, and was reading and spelling shortly after he turned two. He was so smart. Of course he would make amazing progress! Well, he has and he does make great progress and he is very smart, but he is still definitely on the spectrum. However, I don’t say that as a disappointment, like I would have ten years ago. I realize that he has his own set of challenges and his own unique set of strengths. Do I want him to talk? Yes. Do I want him to stop being Autistic? Not necessarily. My hope for him is that he can do what he wants to do and my hope for the rest of us is that the world will value him for who he is and not judge him by what he cannot yet do.
reading a book

sleeping with a giant book

unique solutions

spelling makes me happy

words all over the house always

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